all 40 MD tests 'normal' but 3 of 5 tests i asked for = out of range! B2 low, Hcy high, B12 low (in europe/japan)

Date: Tue, Mar 14, 2017 at 7:40 PM

Hcy off charts high, B2 off charts low, B12 very low/borderline (in Europe)

i'm in the testing/ID phase to see what the results indicate, to get a baseline before i start new supplementation.

some of these tests aren't always accurate so we need to find back alley ways to cross-check verify it ex. the B12 test could be only partially accurate, only accurate through one lens, is only one-angle and apparently not very accurate at face-value.  so based on a tip in lab notes, we are now doing a methylmalonic acid MMA test to 'differentiate' B12 from another angle, as my MD explained.  so my doctor and the labs notes know this fact.

more doubt is added when there is considerable disagreement among medical professionals about normal levels on the low/high thresholds set for these tests. with B12 for ex., 200 pg/ml to 800 pg/ml is the 'normal' range, but symptoms can start appearing at 350 pg/ml.  so while my B6 and B12 both read as 'normal' one has to wonder how accurate/conclusive that really is.  apparently it isn't for B12 and all my symptoms incl. numb hands/feet, blurry vision, dizziness, balance issues, etc do map to low B12 (but they also map to 3-4 other things).

and it turns out i found a federal gov pubmed abstract that admits to how inaccurate the B12 test proves to be and how we can test 'normal' in USA but be deficient or inadequate by European and Japanese standards:  'Misdiagnosed vitamin B12 deficiency a challenge to be confronted': https://www.ncbi.nlm.nih.gov/pubmed/23866416  [and exactly this is what my B12 scores show]  i did not mentioned this to my doc.

that of course casts doubt on the reliability of the test regime as a whole, but we leverage what we can.  at least i'm getting closer to real answers after 13 years of endless doctor clinic urgent care visits and bloodwork repeated in two countries.  the doctors i'm learning from tend to be in 'functional medicine' but cost $300/hr so only for the rich.

add to this mix how the establishment can test for the inactive form of vitamins we ingest, but not for the active coenzymated forms a healthy body converts them into, so if your body is having trouble converting B1 into TDP, B2 into FMN, B6 into P5P etc. then good luck finding a test for that exists, is covered by insurance and available at local labs to be ordered.

my initial goal that kicked off the bloodwork was due to numbing/tics in hands, balance issues, dizzy spells, tremors, and the aim to validate if morton's foot and my 24 symptoms were indeed connected to low P5P, but without an easy to order affordable test for that, the round-about indicators expected were high Hcy and a B vitamin anomaly either high or low (which is what the results show so far).  

a quick search shows how low B2 maps to "fatigue...eye problems, sensitivity to bright light" and "increased risk of depression" and i just discovered while crafting this sentence the gems i needed to know:  that "B2's coenzymated form FMN is also involved in bioconverting B6 to its coenzyme form".  another article notes:  "Here's one of the rubs in supplementing with pyridoxine [P5P].  If vitamin B2 is low as FMN, then the rate of P5P production is typically decreased by 60%."  so if i'm low in B2, i may be low in P5P too.  so having high Hcy is indicator #2 and low B2 is indicator #3 of low P5P.  and that is the back alley way we need to cross-validate these puzzle pieces.

thanks to google, we can self doctor easier than the alchemists of centuries past, order up relevant tests and self-diagnose better than cookie-cutter doctors with their narrow focus and limited insurance options.

as it turns out, the fed gov abstract (indicator #1) announces that Morton's Foot is a genetic result connected to a P5P-deficiency.  they also reference another gene mutation called 'MTH FR' and outline the recommended supplementation formula that works presumably for both gene issues thus inferring a connection between them.  my PCP had never heard of MTH FR, but ordered up the DNA test for me anyway which was very cool. 

this will help confirm that i am indeed a mutant so i can make/sell the tshirt that says 'beware mutant MTH Fr highly volatile!'  about both the MTH FRs and P5P-deficit genes, it is duly noted how not all folks exhibit the same symptoms or severity, so how it plays out in one twin may have no bearing in the other, etc.

so my aim was to ID for myself all possible causes as to why Hcy is high and B2 low besides low P5P and the shortlist is: inadequate B vitamins and/or genetic factors, troubled kidneys or liver (and they look ok at face value).

high Hcy amplifies pain/inflammation, weakens the immune system, speeds up oxidation/aging, multiplies free radicals that do all kinds of tissue damage, damage blood vessel thickness/health thus blood pressure, increase plaque risk.

what i found most revealing so far, is that the Hcy test actually applies to everyone regardless of foot shape gene. as fascinating as all of this is, many reputable doctors incl. dr. weil view the Hcy test as a most relevant and revealing test - a barometer of overall health and disease prevention - a test anyone regardless of their genetics/ailments should take.  he also says the test is rarely used, its not covered by insurance, so doctors cant order it up, can't even see/select it on menus (which is exactly what i experienced).  

the Hcy test could be the smartest $99 you spend if you took any drugs of any kind in the last 5 years.

someone noted how only tests that might result in rx prescriptions are covered by insurance thus made available to doctors to order.  that's easy to understand.  big pharma has no drug developed to lower Hcy, thus no test is easily available.  so you may be slow-poisoned by your system your whole life yet have no way to ID it via clinical channels or even think to ask about something nobody ever said existed, until you're half numb half passed out, too weak/low energy unfit to work.  imagine that.  its no surprise to someone like me who has distrusted medicine for decades.  hopefully it'll sink in for those who still trust white coats more than indy researchers/doctors often offer.

and get this, p5p is so effective and popular as a supplement apparently helping so many people with so many ailments, that big pharm players have asked the gov FDA to block it aka reclassify it as a drug/rx so they can capitalize and control the distribution of it as a medicine aka embed it into various rx or mark it up or dose it to the highest bidders or even remove it from general availability without a doctor's rx.  

if it fixes 100 symptoms, then industry will want to keep it from flooding the market and healing everyone thus killing the unfettered income and dependence on white coats established over centuries.  better to put a threat potion like that under lock/key to not derail all the other medicines and specialties and labels applied to symptom groupings.

and then there's candida which can similarly overburden the liver and the rest of the organs and systems, and exemplify same symptoms:  fatigue, brain fog, headaches, anxiety and depression, digestive, bloating, acne, skin/fingernails/toenails issues, mucosal issues, sinus congestion, whitish tongue, metallic taste, yeasty/cheesy/fungus smell, numbing/tingling, tics/twitching in limbs, cold hands/feet, dizzy spells, blurry vision spells, migraines, ringing in ears.  

i have clues/hints over decades that made me feel a test for candida makes a lot of sense if casting a wide net.

i'm also finding that 3 of us with MF rated similarly high on a simple 6-questions online ADHD quiz; coincidence?

and many symptoms are painless subtle anomalies which most of us ignore or rack up as 'getting older', some ill describe as 'low grade hangover':  groggy/foggy, fatigue/low energy, sensitivity to noise/talk and bright lights and high contrast, antisocial/moodiness, frequent loss of balance to one-side, then add 2-3 drinks and i easily get: more of it all, 3x louder ringing/muffled in one ear, energy tanks cant stay awake, yawn, cant drive home easily, dark puffy circles under eyes.

so i left a message asking PCP to consider adding more tests incl. a candida blood test.  i'm sure more research over the weekend will bring up a few more tests.

--

my message to anyone:  

• dont trust leaders in our establishment can be abreast of everything (they cant be and probably are clueless to your specific situation/need)  
• firmly but friendly outline for your PCP by voicemail etc the tests you really feel you need
• skip the clinic and order the most important Hcy test yourself online, specially if you're not feeling right, have any anomalies from skin fungus/rashes/acne to forgetfulness, allergy/colds to blurry vision,  hearing stuff or brain fog, if you took any rx for any reason in last 5 years or are at risk for stroke/heart etc.

my message to folks with Morton's Foot gene:  

• you may be more sensitive to bright light/noise/cellphones, maybe more sensitive to emf/uv than most, more irritable/impatient/pms/snarky, you might overreact to guilt-trip/hostility/ridicule more, feel the injustice in the world more than most aka your systems, neural, immune and skin are all quietly aging faster than others  
• you probably need more skin protection in the sun on uv 5+ days against aging and sun spots than others  
• to know better what to target get all your Bs tested at same time.  i tested B2, B6, B9, B12 and still aim to test B1 B3 B5.
• order the Homocysteine test yourself online (you dont need a doctor)